Showing 151 - 160 of 829 annotations tagged with the keyword "Patient Experience"

Suburban Shaman

Helman, Cecil

Last Updated: Feb-22-2010
Annotated by:
Nixon, Lois LaCivita

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Because this lucid, rich, and incisive book has not, as yet, been published in the United States, it has not acquired the readership it deserves. For those teaching Medical Humanities or those interested in broader or more global stories and perspectives about physician training, practice, and experiences, Helman’s most recent publication should be considered.

Part One (“Setting Out”) begins in South Africa where Helman’s family, comprised of a dozen doctors, has lived for generations and where his own medical studies occurred. As a child, he accompanied his father on rounds while other children spent holidays at the beach. Before long he discovered how hospitals, during the madness of Apartheid, were to “some extent a distorted mirror-image of the world outside” (3). Appalled by the differences in care and treatment, the keenly aware young man kept notes. His vivid observations of the harsh context of social injustices provide an unequivocal, eloquent, and disturbing critique of medicine then and there. His acute observations of physician behaviors and indigent populations in the city and in the bush contribute, as readers discover in later chapters, to the author’s expanded and compelling interests in cultural anthropology.

Part Two (“The Family Doctor”) leads to London. “After all the heat and light and space of Africa, London—with its low leaden sky and constant drizzle—was like living inside a Tupperware box, one stored deep inside a refrigerator” (47). In the 60s Helman’s migration required an adjustment to a world of technology and order, where as a family practitioner, he had become, in fact, a suburban shaman. In any society, patients wanted “relief from discomfort, relief from anxiety, a relationship of compassion and care, some explanation of what has gone wrong, and why, and a sense of order or meaning imposed on the apparent chaos of their personal suffering to help them make sense of it and to cope with it” (xvi).

Gradually Helman saw connections between the role of family physician and traditional healer: both involved an understanding of “not only a body’s internal equilibrium but also the equilibrium of the patient’s relationships with the world he or she lives in and how treatment should aim not only to treat the diseased organ but also to restore the patient’s life that equilibrium of relationships” (xvii). His encounters with patients and the stories they reveal suggest how important these often overlooked connections are and why they ought to be included in medical training and practice.

By the time readers reach Part Three ("States of the Art”), the author has moved into broader realms of thinking, in which medicine and illnesses are examined anthropologically. After 27 years of clinical practice Helman’s white coat and stethoscope are placed on a hook. Now, as a credentialed anthropologist at University College London, his larger lens allows for sustained scrutiny of the complexities, ambiguities, and nuances in such chapters as “Grand Rounds,” “Hospitals,” “Placebos,” “Third Worlds.” Helman’s range of experiences, multi-disciplinary training, intellectual conclusions, and abundant common sense argues for techno-doctors to learn from holistic practitioners. Whether devastating or humorous, the critiques reflect not just care provision but shared human capacities: the insights are thoughtful and fresh and very worthwhile.

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Leaning Together in the Storm

Smith, Larry

Last Updated: Feb-22-2010
Annotated by:
Nixon, Lois LaCivita

Primary Category: Literature / Poetry

Genre: Poem

Summary:

Summary: This very welcome poem concerns "twelve older men in shirt sleeves," a group of men with prostate cancer. The narrator, one of the men in this "private brotherhood" suggests the difficulty and reluctance of many men to recognize out-loud their mutual circumstances: "Ever notice how no one parks / in the Cancer Center zone." This line sets the tone; the men are vulnerable and afraid. From time to time they gather for support from one another and from the meeting's scheduled speaker. The reader has little difficulty imagining the collective angst and the grasping of hope shared by the participants leaning together in their mutual storm.

Any expectation of supportive discourse is shattered by this evening's guest speaker, a careless surgeon, who strides confidently into the room with his tray of slides. The remainder of the poem demonstrates a worst-case scenario:

I interrupt his gay delivery,
"What about orgasm...?"
"Forget orgasm," he grins,
"You don't have a prostate."

Some smile nervously and bravely ask questions that really matter. Each time the physician exhibits his caustic brand of insensitivity. The narrator, surely expressing the feelings of his colleagues, wants only to "drive / this witch doctor from the room."

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Alice in Bed

Sontag, Susan

Last Updated: Feb-12-2010
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Plays

Genre: Play

Summary:

This play in eight scenes presents the fictionalized character of Alice James, sister of Henry and William James, who after a sickly childhood, succumbed at 19 to a variety of vague and recurrent illnesses that made her a lifetime invalid. She died at 43 of breast cancer.

In a series of encounters (with her nurse; her father; her brother, Henry; several Victorian female figures: Margaret Fuller, Emily Dickinson, and mythological figures from Victorian fantasy fiction and from Parsifal; and a burglar), as well as a long dramatic monologue, her various forms of internal conflict are hilariously and poignantly articulated. They converge on the implications of her recurrently deciding whether or not to get out of bed and do something, and her confusion, often discussed by biographers and critics, about her place in her brilliant family, her vocation as a woman, and her own desires.

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Annotated by:
Woodcock, John

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

In December 1995, at the age of 43, the author suffered a sudden and severe stroke in the brain stem and emerged from a coma several weeks later to find himself in a rare condition called "locked-in syndrome" (LIS). Although his mind was intact, he had lost virtually all physical control, able to move only his left eyelid. There was no hope of significant recovery. This memoir, composed and dictated the following summer, consists of Bauby's brief and poignant reflections on his condition and excursions into the realms of his memory, imagination, and dreams.

The composition of this book was an extraordinary feat in itself. Unable to write or speak, Bauby composed each passage mentally and then dictated it, letter by letter, to an amanuensis who painstakingly recited a frequency-ordered alphabet until Bauby chose a letter by blinking his left eyelid once to signify "yes." In what was likely another heroic act of will, Bauby survived just long enough to see his memoir published in the spring of 1997.

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Sugar Isn't Everything

Roberts, Willo Davis

Last Updated: Feb-12-2010
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Fiction

Genre: Novel for Young Adults

Summary:

Eleven-year-old Amy has been hiding cookies beneath her bed, drinking gallons of liquid to slake her thirst, getting headaches, feeling irritable, and failing to grow though she's been eating huge meals for months by the time she faints and is taken to the hospital. There she is diagnosed with Type 1 diabetes. Though she feels disoriented and angry, she is immediately put into a training group with other kids around her age who have been recently diagnosed.

She has to learn how to maintain a carefully balanced diet and how to give herself insulin injections. The male nurse who teaches them is himself a diabetic as well as a competent, cheerful young man who takes the edge off the experience. He makes it clear to Amy and the others that the primary responsibility for their health maintenance routines lies with them personally.

After release from the hospital, Amy begins to deal with the social adjustments her disease demands. Her brother and parents are helpful, but uncertain about how much to change their own eating habits to accommodate her. Her younger sister finds the accommodations trying and unfair. Amy's friends also have learning to do.

It helps her that she knows a few other diabetic kids, including Coby, a boy who has struggled with his own resentment and the consequences of sloppy monitoring of his condition, but has learned how to control his diet for the sake of staying on the baseball team where he's a star player. Their friendship helps Amy transition into "normal" life hopefully.

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Annotated by:
McEntyre, Marilyn

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

Richard (Kenneth Branagh) is assigned alternative service as a consequence of a misdemeanor. A social worker connects him with the mother of a young woman, Jane (Helena Bonham Carter), who is suffering from Lou Gehrig’s disease. Feeling reluctant and unequipped for such responsibility, he starts taking her on tame outings suggested by her mother. Initially she is hostile and resistant; gradually he gives way to her insistence on unpermitted activities: he takes her on a carnival ride, drives her around in his jeep, makes her dinner at his shabby rural cottage, about all of which the mother remains clueless.

Jane acknowledges that he is the only one who treats her like an adult. In a rare moment of vulnerability, she asks him to help her lose her virginity, not necessarily to "do the awful deed" himself, but to help her hire or find someone who will give her an experience of sex before she gets to the point where it’s impossible. He refuses, she won’t see him, and for a time her mother tries to find another caregiver--a hopeless failure--a woman who talks down to her.

Richard attempts other community service and runs into comic difficulties attempting to help old women, clean toilets, and finally retreats to his outpost where he is building a plane out of scrap metal and junk in a barn. He’s insolvent, but determined to carry through his project, if only, like the Wright brothers, to keep it aloft for 12 seconds. His landlord announces that he’s selling the place and Richard and his airplane will have to clear out within a month. This impels him to try his biplane.

In the meantime, Jane searches internet dating agencies, advertising herself as a "hideously crippled woman" seeking sex, but gives it up. Missing her, Richard finally comes to her home and consents to take her to "get shagged" if she won’t blame him for any of the consequences. They go to London and seek agencies for the disabled that are willing to help her experience sex. The only positive response she encounters is at a nightclub specially for the disabled. She’s horrified.

They go upscale, to a hotel where "gigolos" might be available. Richard hilariously serves as her go-between. He finds one who, alas, charges 2000 pounds. Finally she says, "Okay, then, you’ll have to do it, Richard." This brings him to acknowledge that he’s "a cripple," meaning that he’s been impotent for some time. Instead of offering her himself, he offers to rob a bank. He doesn’t, however, go through with the robbery, but returns to take Jane home with him where she remains as she’s dying.

Ultimately, Jane and Richard both discover that love and friendship are what matter. He takes her up for the one flight his plane is capable of: a few glorious minutes over the sheepfields. The experience caps her life and seems to promise a beginning of his. She tells him, "You have a future, Richard. Either take it or switch bodies with me." She leaves him a final message on the voice machine which is the only way she can communicate, encouraging him to claim his life, and reflecting, "The only life you can have is the one that is available to you."

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Because of Anya

Haddix, Margaret Peterson

Last Updated: Feb-12-2010
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Fiction

Genre: Novel for Young Adults

Summary:

Keely, whose three "best friends" are a dominant clique in their class, notices that a classmate, Anya, appears to be wearing a wig. The girls confer about it at lunchtime, wonder whether to ask about it, and theorize that she may have cancer and be undergoing chemotherapy. Stef, long the most aggressive among the four friends, suggests that Keely talk with Anya and find a way to determine whether it is a wig, but Keely refuses, recognizing in Anya, whom she rarely notices, a quality of loneliness she hadn’t seen before.

Their curiosity is satisfied when Anya’s wig comes off during a gym exercise and she runs out and remains absent for several days. Keely decides to visit Anya and learns that she has a rare disease, alopecia areata, which is painless and otherwise harmless, but causes hair to fall out, sometimes all over the body. When she asks if she can help, Anya replies, "Not unless you want to give me your hair."

Keely researches the disease for class and finds that there is a foundation that collects long hair for wigs for patients suffering from Anya’s condition, so she cuts off her own long hair and encourages classmates to do the same in a gesture of solidarity with Anya, in the process defining a new independence from the clique of friends who have too long shaped and confined her judgments of others.

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Losing and Finding

Fiser, Karen

Last Updated: Feb-12-2010
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Poetry

Genre: Collection (Poems)

Summary:

Like her earlier collection, Words Like Fate and Pain (see this database), the thread of connection among these exquisite poems is the experience of chronic suffering. However the poems vary widely in focus and content, including those that touch on the intimacies of love found and lost, family relationships, musings on the road, political events, philosophical ideas, and qualities of words themselves. All open doors to an inner life deeply examined and thoughtfully lived. The poems deal frankly not only with the experiences of various kinds of pain, but with pain remembered and feared, with the mental detachment that enables one in pain not only to endure, but even at times to be playful about the business of living life in spite of ongoing suffering.

One is aware of the speaker in these poems as not only a patient, but as a writer who loves words, a woman who enters wholeheartedly into the relationships life puts in her path, and an observer with a wry wit and sharp sense of irony. Poem titles include "Cripple Time," "Trauerarbeit," "Phantom Life," "The Mind, That Ocean," "Pain as Metaphor," "Sleeping in My Notebook," "One, With Egg Roll," and "Waltzing the Gorilla."

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Mr. Right and My Left Kidney

Saltzman, Joan

Last Updated: Feb-12-2010
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

This memoir by Joan Saltzman recounts her marriage, in her forties, to a man whose kidney disease was progressing to a point of choice between dialysis or transplant.  The first half of the book is a lively account of their somewhat stormy courtship, layered with memories of her childhood and reflections on tensions with and loss of her parents.  The second half focuses largely on the difficult decision to donate one of her own kidneys to her husband.  Even undergoing tests to determine she was a match required some wrestling with fear and resistance.  The chronicle continues through bumpy recoveries to a new level of intimacy and understanding of ongoing shared life in new terms.  Her idea of "complete recovery" had to be modified once she recognized that even a successful transplant doesn't restore a former state of health, but does restore a new range of possibilities.

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The Resurrectionist

McCann, Richard

Last Updated: Feb-12-2010
Annotated by:
Garden, Rebecca

Primary Category: Literature / Nonfiction

Genre: Essay

Summary:

McCann’s essay is an account of his experience of liver transplantation. It describes his physical and psychic experience of liver failure while waiting on the list for an available organ, his experience in the hospital when the procedure was done, and the aftermath, in which he makes conceptual and emotional adjustments.

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